I was talking to a few of the other mutants tonight and Sandy brought something huge to my attention. Medrise bought cysticfibrosis.com and many other sites for profit. Essentially, they have bought what we live with every day for profit. They've bought our disease to make a buck. To act like it is a nurturing community is a joke. They have walked on many of us, acting as if their site is better off without our brilliance, our experience, our tenacity.
While there are many users who have defected like myself, there are many users who have chosen to remain a part of their site. Many of these people are also using a forum that the mutants have gone to. Let me just say that while I can't control the Internet usage of people, I find it insulting that some of these people are having their cake and eating it too. Each time you visit their site you leave a footprint that encourages sponsors to give them more money. Many of the people remaining on the site are mothers of children with CF, spouses and a few individual cystics who have specific loyalties with the owners of the site. The parents of are important, spouses even more so, but they can never really know what it's like to be a mutant.
I'm over the situation but to think that these people have purchased my disease is sickening. They've bought it, they own it, and they don't even get to live with the dirty grit of it. Somehow they don't even deserve to be cystics.
Because we cystics... let me tell you. We know something other people will never know. We have secrets about life that the people of CF.com don't deserve. I wouldn't wish rotten lungs and pancreas on those people any day. Because they simply don't have the strength to handle it.